Video on Concussions & ImPACT Test

This is a feature story by ESPN Outside the Lines on the epidemic of concussions in teenage sports and the result of untreated concussions

In 2008, 5 high school football players died during games or practices from getting a concussion on top of a concussion – a condition know as Second Impact Syndrome. A recent study by nationwide children’s hospital in Ohio that found an alarming 41 percent of high school athletes with concussion returned to play too soon. And while football has by far the highest rate of concussions compared to any other sport: hockey, wrestling gymnastics, lacrosse, volleyball, cheerleading, basketball, baseball, softball and soccer all have their fair share. Concussions happen when the brain is shaken inside the skull. And even though they’re common in sports many coaches and trainers still don’t know how to manage them. That’s partially because there is no one-size-fits-all guideline for what to do when a player gets one. Some athletes will heal in a couple days and some in a couple months. Researchers are just beginning to unlock the reasons why.

Watch it here

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Video about Concussions in Sports

http://www.youtube.com/watch?v=-4nrxgsRa1o&NR=1ο»Ώ

The growing number of concussions in sports has many coaches, trainers and parents thinking twice before risking a second hit for an athlete who may have had his bell rung. In this Children’s Channel video podcast, Joseph Congeni, MD, director of the sports medicine center at Akron Children’s Hospital, discusses the signs and symptoms of a concussion, as well as the latest guidelines for a safe return to the field.

Watch it hereο»Ώ

Video – A Novel Approach to Concussion Treatment

Here’s the video

“If [certain things hold true]…We have found everyone gets better, in terms of their physiology…”

Quite possibly the coolest thing I’ve ever seen

Okay, for all you hard-core neuro-nerds out there, here’s something that’s quite likely to utterly consume your attention for hours — nee, days, even weeks and months — to come.

It’s RMR Systems, Ltd. 3DView Volume Rendering software, and it is a free download that you can install on your PC, and then look at MRI’s in three dimensions.

I mean, this stuff is so incredibly cool, it just boggles the mind. Here are images from the pre-loaded imaging that comes with it, which are “sliced and diced” on different planes. You can zoom in, cut in from all sides, do cross-sections, and other really cool stuff that I can’t even show here, because they really require a YouTube video to have the full effect. I may just make one of them… when I carve out the time from my crazy schedule.

Note: these are not pictures of me. My MRI images are for my eyes only… oh, and my doctors’ eyes.

Starting view from the Front

Starting view from the Side

Starting view from the Top

“Cut” view from the Top

“Cut” view from the Top and Side

“Cut” view from the Back and Side

“Cut” view from the Front, Top and Side

It really is amazing. Again,RMR Systems, Ltd. 3DView Volume Rendering software, is a free download that you can install on your PC, and then look at MRI’s in three dimensions. If you’ve had an MRI done and you want to see your brain in 3D, you must get a copy of this and view your slices with it.

Like some weirdo geeky Narcissus, I’ve been obsessed with viewing my own brain.

And for good reason.

OMG

Diving Into My MRI

I spent time yesterday studying my MRI, comparing my brain with pictures of normal MRI’s I found online at Google images. What a treasure trove Google is! Just being able to find pictures of what “normal” looks like has been a great boon to me.

Looking at MRIs can be very trippy, and looking at my own brain is kind of spooky. From looking at it, the untrained eye could easily become very disoriented and alarmed. But knowing what other normal MRIs look like is very helpful. How else would I know that I’m not a freak of nature? The brain is just so fascinating!

It’s so great to find descriptions of the normal brain MRIs, since it can be hard to figure out what you’re looking at. I’ve got a used textbook on neuroscience I picked up, as well as a copy of Netter’s Atlas of Human Anatomy, which is a hefty tome of highly detailed drawings (done by Dr. Netter) of virtually every part of the human body, which also have every little piece clearly marked and labelled. I look at my MRI, then I consult my Netter’s book, then I Google the part of my brain that I think I’m looking at and read about it, and then consult my neuroscience textbook, to read more in-depth information that’s at a student level. Fascinating.

But I’m surprised to be having such a hard time finding information on reading MRIs. Maybe I’m not looking in the right places. Maybe that type of information is too advanced to be safe to release into the public, lest we all fire our radiologists, start reading our own MRIs, and jump to conclusions about ourselves. I’ve already had people look askance at me, when I told them I was going to be studying my MRI. They clearly seemed to think that I’m not qualified to do it, but I figure, why let that stop me? I’m not getting paid by anyone to ply that trade, and I’m only interested in my own situation, and it’s really just for my own gratification, so I’m not letting their skepticism stop me. It’s my body. I’ll study it to my heart’s content.

I know there’s no substitute for a qualified neurologist or radiologist, but I really need to understand what’s going on with me, and nobody seems to have the time to spend with me to make sure I’m clear on what’s going on. It’s very discouraging to have this level of testing done, only to not be able to find someone to help me understand it. The neuro I saw a week ago wouldn’t give me any more information, other than that my tests read as normal. I asked if they could show me the film, but they brushed me off. Maybe they thought I’d be looking for something that doesn’t exist… malingering and all that. I’m not malingering. I’m curious! And honestly, I don’t want to milk this and make myself out to be sicker than I am. I just want to know why my life experience is so different from what I hear everyone else describing. I want to know why I have the many, many issues I’ve got. I want to know what makes my brain unique — and treat that uniqueness as a strength, not a weakness. And having MRI images to help me gain just a little more insight into my situation seems like a great opportunity to learn more… even/especially if what I learn is that my variations on experience are “within normal range” and not the sort of thing I need to be concerned about.

I did find some pictures of my brain that I have questions about. Places where there are asymmetries and/or dark/light spots that might be old injuries or some abnormality. The part of me that’s been on high alert — or hovering around there — is eager to run off to a neuro to get the spots and dots and bright places explained… to explain how the asymmetries in my brain might translate to some irregularities in how my mind works. I know I need to calm down, get some rest, let it all sink in. There’s no tremendous hurry, now that I know that I’m not in imminent danger from a brain tumor or MS or some other terrible neurological condition. I can relax, now. And I need to make more of an effort at doing that.

In the meantime, while I recover from my over-excitabilities, I’ll think about my next steps. Study normal MRIs online, look around, just do the whole visual image thing, getting my eyes used to the sight of MRIs, so when I do get a chance to talk to a neuro about my results, I can sound at least moderately intelligent. I’m thinking about contacting that last neuro I went to see — the one who treated me like I was looking for drugs, who has since apparently recanted their attitude towards me and offered to help me “in any way” they can. I may give them another chance — but next time, take someone I trust with me, and ask the neuro to just walk me through the high-level points of my MRI. There are some things that are grabbing my attention, and I would like a little bit of an explanation.

I really need someone to read it who knows how to interpret the orientation of the images. I think MRIs may give you a mirror image of a body part, so the left side of the picture is actually the right side. At least, that’s the impression I get from reading descriptions of MRIs that show clear anomalies on the left side… but the text talks about right-side issues. It gets confusing. One side of my brain is shaped a little differently than the other, and I’m not sure if my right side is lop-sided, or if it’s my left. I think it makes a difference, too, which side is varied from the “norm” — left and right sides have different functionality, or so I understand, and if I’ve got developmental issues with one side of my brain, then knowing about them might help me better understand and manage my own issues.

It could be that I’m on some wild goose chase, and that all the differences in my brain are in fact quite normal. But looking at my pictures and comparing them with other MRIs, my head is kind of lop-sided, and one side of my brain has a noticeably different angle than the other side — between the lower frontal/parietal lobes and the temporal lobe that sits beneath it. I’ve got some asymmetrical bulges, and in some places, one part of my brain looks like it’s been crowded by another part that is not shaped the same way as others’ normal pix. It is considerably wider and looks bigger than I’ve seen elsewhere, so that just makes me wonder.

I don’t think it’s a bad thing, having parts of my brain differently arranged than the norm. If anything, it’s probably an advantage. Even if my brain developed differently over the course of my life, it hasn’t completely stopped me from living my life, and no one would probably ever guess that it’s developmentally different. I’ve been far too successful in my life, far too resilient, far too capable, far too adaptable, far too effective, all across the board, for any sort of developmental differences to be a liability. If anything, my differences are a strength. And I’d never part with them. Not at all.

Looking at all these “normal MRI” pix, I have to wonder… What is normal, anyway? If you think about it, the chances of anyone turning out the same way as other people are just so slim. The human body is an amazingly intricate and sensitive system that can be impacted by unseen, invisible forces that we don’t recognize for a long time, if we recognize them at all. We’ve got billions and billions of cells constantly growing and changing and multiplying, we’ve got tons of distinct body parts, we’ve got so many different bodily functions, many of them invisible to us. And we’ve got not only our internal world but our external world to deal with and factor in. Some days, I’m amazed that the human race — or, for that matter, any living creature — makes it through a single day.

Lots can go wrong. Lots can change us. Lots can affect us and our development. But variations are what keep the human race viable. The healthiest living systems have a lot of variety in them, and I would expect that variations in brain development are critical for a healthy system, as well. Even if those variations appear to be “disabilities” or some other sort of rare deviation. The human brain is an amazing organ, and not only can it do things we cannot even begin to imagine possible, but it can also accommodate a whole lot of additional variations and bounce back from injuries, with neuroplasticity and remapping functions and other mechanisms we haven’t even begun to name. (I haven’t done a plug for The Brain That Changes Itself by Norman Doidge, in a few months, so I’ll mention it here — if you have doubts about the ability of the brain to adapt, then you should definitely check it out.)

So, even if my brain is developmentally anomalous, and even if it got broken along the way with those hits and falls and accidents, and even if it gets tired and overwhelmed and doesn’t know where it is, sometimes, it’s still mine. It’s what I have to work with. And so far, injuries and accidents notwithstanding, it’s still going strong.

Got a copy of my MRI on CD

Hallelujah! At last I have pictures of my brain.

And now it’s time to explore it.

I got the images on CD yesterday, but I had company last evening, and this is the first I’ve been able to take a look at the images. My computer keeps locking up on me, tho’, so I have to reboot every now and then. The GE program that displays the MRI slices apparently requires more power than my laptop has. Oh, well. At least I have the images and I can look at them.

Already, I’m seeing interesting things that might explain a thing or two with me. In addition to the TBI-caused difficulties (which aren’t immediately visible on the pictures, at least to me), it appears that my brain is not entirely symmetrical in every way.

Interesting…

I’ll write more later, when I have been able to digest this a bit more.

EEG and MRI are both normal!

Woo hoo!

I had a visit with my new neuro on Monday, and they tell me that my EEG and MRI both read as NORMAL.

There is no sign of a brain tumor.

There is no sign of MS.

There is no sign of degenerative disease.

I’m way symmetrical and looking good.

At last, I’ve got some actual testing and numbers to show for all this. Enough of the guesswork — I’ve got plenty of notes and detailed observations about my life, but no doctor apparently has the time or inclination to sort through them all.

Plus, with my over-the-top attention to detail and fixation on things that are experientially important (but probably medically insignificant), who knows if anything I’ve recorded is even any use to them at all?

God, I love minutiae. But it doesn’t love me πŸ˜‰

Anyway, I’m trying really hard to stay positive through all this. I think that part of me would have liked to see at least a little bit of “variation” on my test results, so I have concrete proof that something unusual is “up” with me.

But this is actually one of the things that makes TBI such a conundrum for folks — both medical doctors and people who experience it. Your test results can come back looking great, your CAT scan, your MRI, and your EEG can all come back normal. But there are real issues hidden under the surface that emerge over time and with varying degrees of difficulty.

And those issues can look like seizures or mental illness or ADD or OCD or some of the other “alphabet” conditions that are swimming around out there.

Or, worst of all, they can be interpreted as a lack of will, being a “bad seed”, being “sinful”, or old-fashioned “character defects” that have little or nothing to do with character and have everything to do with the brain not behaving as it should.

And it can make you crazy. Personally, I wouldn’t be surprised to learn that mental illness can emerge as a result of the stress and strain of dealing with TBI… with or without knowing it.

Well, I would love to write more… and I really want to. But I’ve got to get ready for work and stop at the bank to close the business bank account I opened back before I realized that I wasn’t nearly as capable as I thought I was, and my MBTI was propelling me forward in life, fueled by anxiety, drive, aggression, and a deep-seated need to prove to myself and the world that I was really doing very well… when in fact, I wasn’t.

I know now that the complicated tasks involved with running a business are well beyond my broken brain. I may be able to get back some of my functionality with some speech/occupational therapy, but that’s a ways off in the futur. Right now, it’s time for me to let go of that unrealistic drive and work with the limitations I have. In a way, it’s a huge relief. There are plenty of other ways I can prove my self-worth to myself and the world that don’t involve adminstrative paperwork and filing quarterly taxes πŸ˜‰

Note: This was cross-posted at Daily Strength

Prepping for my neuro visit tomorrow

I’ve got another neuro visit tomorrow — this one is finally a substantial one, when I’ll actually be reviewing the results of my MRI and my EEG. It’s been about a month since I got my MRI, and it’s been nearly 3 weeks since my EEG, and the suspense has been really intense at times.

In my more dramatic moments, part of me thinks, “Today is the last ‘normal’ day/week of my life.” And I get all worked up, thinking that these test results might come back with terrible news or some sign of a horrible condition/disease/tumor/whatever that will sideline me permanently — or at least turn my life into one big detour.

I worry that I won’t be fully functional anymore. That I’ll have to invest all this extra time and energy in overcoming a real issue that I’ve blissfully ignored for a long time. That I’ll be officially disabled. That I’ll be “less than human” and have to live a second-rate life as a result of what the pictures of my brain show.

I also worry that they won’t find anything at all… that I’ll turn out to be crazy and people will look at me like I’m just looking for attention… making things up… malingering… defrauding professional service providers.

Worst of all, I think, would be getting inconclusive results that will waylay my energy and keep me pre-occupied trying to track down the root cause of stuff that’s been getting in my way for a long time, but I’ve been able to brush off and minimize until the past year or so.

I’d almost rather get no results than inconclusive ones. But whatever happens, happens. And I’ll just deal with whatever comes up. I always do.

This waiting around for test results is really exhausting. Especially since I never got any medical attention for any of my multiple TBI’s, and I don’t have a lot of reliable medical records describing my symptoms and issues in medical jargon-y detail. I’ve never been able to articulate my issues to doctors with any level of accuracy, and most of the time, I’ve just given up and said, “Oh, forget it — it’s not that bad, really…” and went off to lick my wounds where I was safe and warm and able to tend to myself and my problems on my own terms.

I swear, this cognitive-challenge/communication-difficulty stuff just makes me nuts. I have a hell of a time articulating my issues out loud to doctors, who are all too often looking for medical data and/or some Latin-based vocabulary in order to properly assess my situation. I don’t know Latin, and I don’t have medical records that show evidence of my injuries. All I have is my life experience and a muddled, garbled mish-mash of out-loud observations that don’t come across right, when I’m talking to someone who doesn’t know me personally (and even if they do, can’t for the life of them imagine that I’ve actually been injured). Absent concrete data, I’m out of luck… so, I’ve been largely resigned over the years to just being out of luck.

Oh, well… what’s next? Life is waiting…

But tomorrow, I will actually be having a discussion with a doctor about real, honest-to-goodness medical test results. Imagine that. I am really looking forward to it. I’m looking forward to it so much that I’ve been studying up on MRI’s and EEG’s and learning to recognize what they show.

I found a couple of great sites for learning about them — with plenty of pictures, which I desperately need.

There’s the section on Electroencephalography and Evoked Potentials followed by their Electroencephalography Atlas over at Medline. I have been studying the page on Normal Awake EEG
so I know what I’m looking at, when the doctor shows me what’s going on with me. I’m studying the normal EEG, as well as other types, so I can tell the difference — if there is any — between what my EEG looks like and what a normal one would look like.

Normal Awake EEG - A 10-second segment showing a well-formed and well-regulated alpha rhythm at 9 Hz.

Normal Awake EEG : A 10-second segment showing a well-formed and well-regulated alpha rhythm at 9 Hz.

I’ve also been studying MRI’s over at Harvard’s Whole Brain Atlas, which shows what a normal MRI looks like — with the different slices — so that when I look at my own MRI, I can see if/how it differs from how it “should” look.

The Whole Brain Atlas

They have MRI slices from different scenarios —

  • Normal Brain
  • Cerebrovascular Disease (stroke or “brain attack”)
  • Neoplastic Disease (brain tumor)
  • Degenerative Disease
  • Inflammatory or Infectious Disease

And you can look at the slices from different angles, which is way cool!

I’ve been studying the normal brain MRI slices, so I am better able to understand what — if anything — is wrong with my gourd.

Now, on a wireless or dialup connection, the images load a little slowly, but on broadband/cable modem, they’re speedy.

Okay, so I know I’m a bit of a nerd/geek, but this just fascinates me. I’m also studying EEG electrode placement patterns, so when I look at my own EEG, if there is any abnormal activity, I can see what area of my brain it takes place in.

Electrodes are placed on 10-20 different areas of the scalp, and they’re lettered/numbered by position. F means Frontal Lobe, T means Temporal Lobe, O means Occipital Lobe, P means Parietal Lobe, and combinations of them mean the electrodes are getting data from more than one lobe. The numbers are odd on the left side of the head and are even on the right side. Here’s an image I’ve been studying:

eeg electrode placement - click to enlarge

I think it’s fascinating. And I have a lot to learn. I think I’ll get myself a balloon and blow it up, then write all the electrode numbers on the balloon with a permanent marker, so I have a 3D version of the placement to take with me to the doctor. I’ll let the air out of the balloon, so I can take it with me easily and then blow it up at the doctor’s office so I can see what’s up, when they start talking about the different readings of my brain.

Of course, this may be moot, if my EEG comes back perfectly normal, but in case it doesn’t, I would like to understand where/how/why things are ‘off’ with me… what it means… and if/how any of my prior TBIs have specifically impacted certain parts of my brain.

This stuff just fascinates me. It’s a lot to take in, and it can actually be pretty serious, but for now I’m going to entertain myself… not to mention distract myself from all the different scenarios my broken brain is coming up with.

Sometimes the inside of my head is a scary place to be.

At last, an MRI…

Good news on the neurologist front… finally! I had an initial visit with a new neuro who will actually listen to me. I guess three’s the charm. The first two I went to, seemed to have a lot invested in just dismissing my issues or making them out to be just stress-related, but this doc actually sat and listened to me list out my issues.

Or maybe I was just better prepared this time. I know I was a lot less nervous, this time around, and that probably helped. And I’ve gotten more accustomed to talking to doctors, since that first visit nearly a year ago. But this doc was actually interested in what I had to say, which was pretty amazing. And they let me use my notes.

We actually managed to cover a lot of territory in the hour we spent together, and by the time the visit was up, I had an appointment for an MRI this weekend, a call in to the EEG lab for another appointment in a couple of weeks, and I had a third follow-up appointment scheduled for late next month.

Getting the right help makes all the difference, I say.

And having the right insurance does, too.

If I’d known, a year or two ago, what I know now, I would have done the following differently:

Two years ago, I would have checked around with friends about different kinds of insurance, and I would have changed my carrier when I had the chance. I would have NOT gone with the company I’ve been with for over 10 years, which is fine if you’re healthy, but notorious for declining to cover out-of-the-ordinary things, like neuropsychological evaluations and neurological testing. I would have gone with another plan that is not nearly as stingy with adequate coverage and doesn’t treat you like a moocher for just wanting to stay alive.

A year ago, I would have been more aggressive about finding out which doctors really are in my hospital’s network, and I would have insisted on seeing them, no matter what my PCP’s receptionist told me about them not being in “the network”. God, but this has been a huge problem with me, and I still come across it — being told that I can’t see so-and-so, because they’re “not in the network” that’s covered by my health plan, when they really are.Β  See, since healthcare has become all consolidated, lots of hospitals have teamed up to form networks of healthcare providers. And if I need to find a specialist but there’s not one at my hospital, I need to find one who is in the wider network. The thing is, my hospital is really territorial about keeping patients within their own “walls” and keeping us from seeing people outside this hospital, even if they don’t have the kinds of specialists I need. So, whenever I have said to my PCP, “I need a referral to —–,” they have typically responded, “We have doctors like that here!”

The thing is, they don’t. For head injury, it can be very tricky, finding the right neuro. Some neuros are in bed with insurance companies and they focus on proving that people really aren’t injured all that badly, so the insurance company won’t have to cover their treatment. And others just don’t get the whole head injury thing. It’s very puzzling that professionally trained medically “qualified” doctors — especially neurologists — can’t get their heads around the idea that brain injuries (even mild ones) can carry serious cognitive-behavioral consequences that can wreck the life of even a “recovered” brain injury survivor… and that these injuries need to be constructively addressed for the sake of human dignity and basic functionality. Clearly, there’s a realy need for some substantive education, there. Either that, or the people saying, “Oh, those brain injured people will be just fine,” have sustained brain injuries, themselves, and that’s what they tell themselves to avoid the pain and tribulations of confronting their own limitations. Who can say?

Anyway, getting back to the referral thing, when I would tell my doc, “No, I need to see a TBI specialist, and this is the person I need to see,” (having done my homework and asked around), and they pushed back and told me that I had to stay inside “their network” I didn’t realize that their network actually includes a bunch of different hospitals in the greater metro area, and some of the hospitals are associated with excellent medical schools. It took me about five false starts, before I stumbled upon the information about how wide their network really is. And in the process, I canceled — or just didn’t make — a couple of appointments with neuros who came very highly recommended, but weren’t “in the network” — the immediate one, that is — but really were in the wider associated network.

Yes, it is confusing.

And over the past year, I would have spent a lot more time not taking NO for an answer, when it came to securing proper care for my unique condition. I can’t tell you how many times administrative staffers gave me the runaround, put me off, treated me like there was something wrong with me for wanting to get help for my hidden difficulties. I was just so flabbergasted that anyone would question my right to take care of myself and keep myself from being jobless, homeless, destitute, and dying before I absolutely had to. They couldn’t see my difficulties, because I hid them so very well, and it took a monumental effort to bypass my instinctual tendency to downplay my difficulties and actually say out loud that I needed some help. I hate being treated badly, when I’m in a vulnerable spot, and that’s what happened, time and time again. And it took me about a year to get the hang of talking back to the administrative staffers who were totally snowing me on the “covered network” details and actively denying me access to the help that was most appropriate to me, before I finally acquired the skill to say, “Actually, this specialist IS in your network, so don’t deny me the help I need with a specialist who knows what they’re talking about.”

I also would have challenged those other neuros on their decisions to not order testing for me. The times when the docs said, “I don’t think you need an MRI or an EEG,” I would have said, “Is that you talking, or the insurance company? How much do they pay you to say that?” I would have really given them hell about just brushing me off, and I would have challenged them on their decisions and I would have called them on it.

Apparently, as a friend of mine who used to be in medicine told me the other day, it’s common knowledge that doctors are compensated by insurance companies for not ordering testing like MRIs and EEGs. Yes, docs get a kickback from insurers for not doing their jobs — or a least doing less of their jobs than they ‘have’ to.

This just floors me. I guess I’d have to show up close to dead and hooked up to a machine cranking out objective metrics for clinical analysis, in order to be taken seriously, but you know what, I’m just not going there. I’m a lively, vibrant, awake, engaged human being, and I actually like to live. So why would I subject myself to that sort of experience, just to make some doctor/insurance company happy? It never occurred to me that I was here to do their bidding. Funny, I thought it was the other way around. But then, I have sustained multiple brain injuries, so that probably has impacted my capacity for cynical cognitive shortcuts.

Anyway, now I know these few simple but critical things, and I can now act on that knowledge. Speaking of acting on knowledge, I think I’ll pay a visit to the hospital administration and discuss this disturbing tendency with them. I understand that they are trying to stay solvent, and they have to do what they have to do, to keep their books balanced, but actively discouraging people from seeking out proper care is just unconscionable. And someone needs to be made aware of this. I’m not asking them to send everyone out to other providers for help — just don’t actively prevent those of us with specific, unique, highly specialized conditions from getting the help we really, truly need.

That being said, I’m going to read up on MRI’s now, and prepare myself mentally for my appointment this weekend. I’m actually very excited to be going — I love machines, and the whole magnetic resonance imaging thing gives me a thrill. I don’t care if it’s loud, I don’t care if it takes all day. I’m looking forward to A) getting a close-up look at this machine, and B) actually getting some answers about what’s going on in my head — answers that are NOT based on speculation and extrapolation and deduction, but honest-to-God pictures.

I can’t wait!